This Is MS Multiple Sclerosis Community: Knowledge & Support

"Any research that sheds new light on the cause and/or treatment of MS isexciting. If Dr. Zamboni’s findings are shown to apply to large numbers ofpeople with MS, it would represent a radical departure from our currentmodel of how MS occurs. Caution is warranted along with the excitement.Here are a few points to consider:

1) Dr. Zamboni’s findings contradict decades of prior re3search fromhundreds of scientists around the globe. Most prior research pointstowards MS being due to a combination of genetic and environmentalfactors.

2) Findings of venous insufficiency affecting the brain would notaccount for MS-related demyelination in the spinal cord. Similarly,treating venous insufficiency of the brain with the “LiberationTreatment” would not be expected to have any affect on the spinalcord. For many with MS, disability is a result of demyelination inthe spinal cord more than the brain.

3) Understandably, many in the MS community would like to pu5rsueultrasound studies to see if they have the venous changes describedby Dr. Zamboni. This may not be an easy undertaking. The series ofultrasounds done in this study were not straightforward and will notlikely be available outside of research for some time. We are lookinginto local options for providing this type of testing.

4) The venous dilation treatment for CCSVI seemed to be of benefit inrelapsing-remitting MS, but not in primary or secondary progressiveMS. The search for a therapy to slow progressive forms of MS remainsfrustrating.

5) This trial was not blinded. An unblended trial means that both thedoctors and patients knew that active treatment was being given.There is always the potential for unintentional bias in an unblendedtrial, sometimes making a therapy appear more effective than itreally is. The researchers for this trial themselves state,” There isa great possibility that bias could be playing an important role intrying to find hope for the treatment of this chronic disorder.”

More research is planned to see if CCSVI is indeed a cause of MS. Even ifthis condition only explained MS for some people, this would be a majorscientific breakthrough. The take-home message seems to be cautiousoptimism."
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I believe he's dead wrong in point number 2
Feel free to chime in, Id be very interested to hear everones opinion
Thanks All!

One thing that doesn't appear logical is how is it possible to do a blinded study? This procedure is done with the person awake. There are detailed accounts about how it feels when the stent is placed, unblocking the pinched vein. I would think people would be well aware that they didn't have anything placed in there. Another thing, isn't it unethical to do unnecessary surgery, and wouldn't it be unnecessary if nothing was done to unpinch the vein? Just asking!????

The screening trial WAS blinded. There were 65 MS patient and 235 controls. That WAS a blinded study. The treatment wasn't blinded, that is true. Why would you not treat a venous malformation ?? :

Here is the full paper on the screening :

http://jnnp.bmj.com/content/80/4/392.full

Here is just the Abstract :

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Abstract
Background: The extracranial venous outflow routes in clinically defined multiple sclerosis (CDMS) have not previously been investigated.

Methods: Sixty-five patients affected by CDMS, and 235 controls composed, respectively, of healthy subjects, healthy subjects older than CDMS patients, patients affected by other neurological diseases and older controls not affected by neurological diseases but scheduled for venography (HAV-C) blindly underwent a combined transcranial and extracranial colour-Doppler high-resolution examination (TCCS-ECD) aimed at detecting at least two of five parameters of anomalous venous outflow. According to the TCCS-ECD screening, patients and HAV-C further underwent selective venography of the azygous and jugular venous system with venous pressure measurement.

Results: CDMS and TCCS-ECD venous outflow anomalies were dramatically associated (OR 43, 95% CI 29 to 65, p<0.0001). Subsequently, venography demonstrated in CDMS, and not in controls, the presence of multiple severe extracranial stenosis, affecting the principal cerebrospinal venous segments; this provides a picture of chronic cerebrospinal venous insufficiency (CCSVI) with four different patterns of distribution of stenosis and substitute circle. Moreover, relapsing-remitting and secondary progressive courses were associated with CCSVI patterns significantly different from those of primary progressive (p<0.0001). Finally, the pressure gradient measured across the venous stenosies was slightly but significantly higher.

Conclusion: CDMS is strongly associated with CCSVI, a scenario that has not previously been described, characterised by abnormal venous haemodynamics determined by extracranial multiple venous strictures of unknown origin. The location of venous obstructions plays a key role in determining the clinical course of the disease.

Here is cheer's Facts and Fictions post :

http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/ccsvi-fact-or-fiction/205971757210

ozarkcanoer

Here is Marie's post on progressive MS and CCSVI :

http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/the-progressive-problem/193496167210

CCSVI is the first hope for SPMS and PPMS.

ozarkcanoer

There have been many studies of a venous cause for MS. Look at the literature. Make sure you look at the whole page :

http://csvi-ms.net/en/content/publications-venous-multiple-sclerosis

Dr Zamboni doesn't say that MS is not autoimmune. Watch the CTV W5 documentary.

I'm sorry, Chris, I didn't mean to jump on you like that. Please forgive me.

The problem is we keep hearing the same comments on CCSVI over and over again. I just want to set the record straight.

Welcome to the TIMS CCSVI forum !!!!!!!!

ozarkcanoer

Please get back with him about the spinal cord, the azygous vein 'drains' the spinal cord. The azygous vein has been found to be obstructed in many MS sufferers, and has had to be fixed with angio and/or stents.

As for environmental factors and echo-doppler studies, this is from cheerleaders notes taken at the September 8 Cenaculum in Bologna :

"Dr. Zamboni then began to dedicate his work to develop a system of diagnosis of venus flow in the brain. He has found 100% correspondence with CCSVI and MS. He believes an international training program in Echo-Color doppler needs to be developed. and that there needs to be cooperation of neurologists and vascular surgeons. He mentioned endothelial disrupters such as smoking, cpn, EBV, and intracellular iron deposition as all being means of exacerbating this mechanism of disease. He spoke of his collaboration with neurologist Dr. Fabrizio Salvi of Bologna and the Jacobs Neurological Dept of SUNY Buffalo as being an example of such a collaboration."

see this thread :

http://www.thisisms.com/ftopic-8074-0.html

There is a lot to read and learn about CCSVI, that's for sure !!!

sincerely,

ozarkcanoer

One last thing (I think this is the last thing, LOLOL), about genetics and CCSVI :

http://www.fondazionehilarescere.org/pdf/HILARESCERE-abstract-Ferlini.pdf

Regards,

ozarkcanoer

Chris--Welcome and thanks for letting us know your neuro's thoughts. I'm chiming in on #4.


The following is a quote from Fondazione Hilarescere (the research from Sept. 8th 2009; sorry I couldn't get a direct link to that document). They reported that the quality of life improved in PPMS and SPMS and there was no progression.

I think people may be fixated on the "no improvement", and forget the "no progression" in PPMS and SPMS. Now, it was a small "n" and not blinded.


I think some of us hope that interventions for CCSVI will indeed stop progression; maybe the frustration your neuro alluded to will soon be history.

Sharon

Chris' doctor raises some very good points, and the responses here do not really acknowledge that.


A blinded study does not necessarily mean that the patient is unaware of the procedure or treatment, just that the examining doctor or medical professional is. See the Campath trials - patients in this study know which treatment they are given. Having the doctor blinded is a must in order to eliminate possible biases, and most trials are strict in this regard. A study in which both doctor and patient are unaware of the treatment is called double-blinded.

Though the initial Doppler scans were blinded, the follow-up scans were not. From Zamboni's paper "Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis:"

Given that with the ultrasound, pateints only had to meet 2 out of 5 criteria, to meet this always seemed somewhat easier to get positive results, whereas the venography would be the proof in the pudding. And the neurological results of treatment were not blinded. Regardless of the ethics of treating stenoses, having an examining neuro blinded is important to the accuracy of the results.

On the issues of what causes the spinal lesions - many who have spinal lesions here are reporting they do not have blockages of the azygous vein. This doesn't really agree with Zamboni's results - so then what? And though this wasn't in the doctor's list of concerns, one thing that has bothered me is, in Zamboni's theory, why exactly is myelin being destroyed? Immune cells go after the iron that accumulates, and they just happen to also go after the myelin sheath?



In Zamboni's latest study, the MSFC scores for progressive patients were not statistically significant. And, though the QOL measure was significant for PP patients, the QOL is basically a questionnaire. So it would seem this is pretty subjective.

For the RRMS patients, he reports the number of relapse-free patients went from 50% to 27%. For the 35 RRMS patients, this is 17.5 patients and 9.45 patients, respectively. How can you have a fraction of a person?

And it's not clear from the study, but it looks like the MSFC test was given once before the procedure and once at the 18 month follow-up. Most clinical trials perform this test on a regular basis, say every 3 months, to get trending data. Performing it once doesn't have as much value, since, on any given day, the results of components of the test could vary (I know this from experience).

Though I try to just ignore the people on here who are here just to stir controversy and not have intelligent discussions I have to at least point out pure BS - in blinded studies patients are also ALWAYS 'blinded'. The purpose of this (and the reason that many are asking for a blinded study of this) is to eliminate the placebo effect. I forget the exact numbers but in almost every study even the placebo patients report improvements, it is a powerful force.

Dr Zamboni isn't addressing the immune system aspect of MS. There are
gazillions of studies that are currently funded that are addressing this aspect. It would be nice if it were all wrapped up in one small package, but it isn't. Given the failure of current drugs to treat progressive patients, a look outside the box is warranted.

When Avis Favaro asked Dr Zamboni "Is MS an autoimmune disorder?", Dr Zamboni said "Of course it is. We have proof." All Zamboni is claiming is that his studies have found that inadequate venous draining from the brain is strongly correlated with MS, and that he has a procedure that repairs venous malformations of the jugular and azygous veins.

My take on his theory is since CCVSI and MS seem to so closely linked, then maybe CCSVI is a cause and not an effect of MS. Someone else might argue the reverse. Then that someone else should PROVE that CCSVI is an effect of MS. Right now my vote goes to Zamboni.

ozarkcanoer

Making my way to the ballot box right now

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap